Lynsey's story: people's mental health needs to be looked after

• Diagnosed with type 1 diabetes aged 6
• Began to disengage with the condition in her early teens
• By 17, she rarely tested her blood sugar levels and started missing insulin doses
• Struggled with being moved to an adult clinic with no warning at 18
• Admitted to hospital with DKA and kidney infections
• Sight problems at 23 revealed damage to retinas in both eyes
• Did DAFNE course aged 24 and got help from diabetes team 
• Joined Diabetes UK’s Young Adults Panel in May 2017

I was diagnosed with type 1 diabetes when I was 6. I remember being crazy thirsty all the time. It was my little brother’s birthday and I was filling up two-litre bottles and drinking them. That was the final straw for my mum. She’s a podiatrist and had always worked in diabetes clinics, so she knew I needed to see someone. 

Because my dad’s in the Navy, my parents moved every two years. So, at 11, I went to boarding school in Suffolk. The first two years were okay, but by the time I was 13, I started to pretend my diabetes wasn’t there. 

My HbA1c was constantly high, but I hid it from everyone around me – even my mum who called me a couple of times a week and would always ask how my bloods were. I’d lie and say everything was fine and then change the subject. 

Missing insulin doses was never talked about at my children’s clinic, but every time I went and my numbers were bad, they’d say: “If your levels are high for too long you could go blind”. But it was in a telling you off kind of way, rather than asking me if I was OK or needed help.

My mum was always warning me about diabetic complications, but because back then I wasn’t seeing an immediate effect, I just thought, “it’ll never happen to me”. Obviously, that’s not true, but because I wasn’t seeing the consequences it didn't sink in.

I got a pump when I was 17 and started off really well on it, but I soon lost motivation. I rarely tested my blood sugar levels and I started realising that the less insulin I did, the easier it was for me to lose weight.

Then, when I was 18, I got moved into an adult clinic with no warning. It felt like I became a number in a system rather than a patient. I’d turn up and there would be a roomful of elderly people with Type 2. 

Every time I went I saw a different team and would have to explain my entire medical history. It felt like it wasn’t worth my time, and I certainly wasn’t going to have a conversation about what was going on with people I didn’t know. I tried once or twice — I mentioned a few times I was concerned about my weight and burnt out with diabetes but quite a lot of the time I'd be met with things like, 'well make sure you do your blood tests because they're really important.' So, after a few appointments, I stopped going.

My low point

There were some really low points at university, I didn't really want to get out of bed. I had no motivation to do anything or speak to anyone. I was diagnosed with depression and given medication for that. I think quite a lot of that was about diabetes and the way I felt about diabetes but that was never addressed ever. I was given anti depressants and that as that. I don't necessarily blame anyone for that but there was a lot of missed opportunities before it got to the stage it did. 

I was constantly tired, thirsty, irritable and unwell, but putting on weight didn’t feel like an option. I got admitted to hospital for diabetic ketoacidosis (DKA) but I blamed it on my pump failing. Then, in 2015, I had three week-long stays for kidney infections, and another admission for DKA the following year. 

I went back to my diabetes clinic, but I didn’t want to be there. I really didn’t want to accept diabetes was in my life – I knew how hard it was going to be to get things back on track and I didn’t feel ready for it. So I just fell back into old habits.

In summer 2016, I started getting black marks in my eye and cloudy vision. I was completely in denial, but I went to A&E to get it checked out. It turned out that I had such extensive retinopathy in my left eye that the retina had almost completely detached and the one in my right eye was folded over and going the same way.

Five operations later, I’m registered as visually impaired. My periphery is really affected and I see black marks across my central vision, but I’m very, very lucky to have sight in my left eye. The surgeon said it’s one of the closest things she’s seen to a miracle in her working life.

The eye consultant said to me you've got to get yourself together and get it sorted out. I don't know why I ever agreed to do it but I'm glad I did, I went on a Dose Adjustment for Normal Eating (DAFNE) course. I was in a room with five other diabetics and even just joking about some of the annoying things about living with diabetes made me feel a million times better.

I had never sat in a room with other type 1s before this and it was the peer support element of the course that I found most valuable. It felt really good to talk about things with other people who really understood and to ask questions without any judgement. 

It gave me a real boost in terms of my motivation to get things back on track. I want to lead a healthy, happy life and I can’t do that if I’m not looking after myself, and I can’t look after other people if I’m not looking after myself.

I’m passionate about the fact that so many people have similar stories to mine, with missed opportunities, falling through the gaps, and their mental health not being looked after. Once you move into adult care, the focus is very much on looking at your numbers and not really addressing how hard it is mentally to live with diabetes day in, day out.

In 2018, I spoke at the National Paediatric Diabetes Audit National Conference about my experience of insulin omission. The word ‘diabulimia’ has been thrown around quite a lot in the media lately, but you only see the sensationalist headlines.

Emotional health

The mental health aspect of diabetes is definitely the hardest thing, especially as a young adult with all the other things you have to face. Diabetes is like having another full-time job and you’ve got to be able to balance that out.

When I was first diagnosed, it didn’t affect me mentally, but as I got older I felt a bit more self-conscious. As I started becoming a bit more independent, I realised just how much of my diabetes I had to take on myself. It’s not a condition you choose, and you’re forced to live with it for the rest of your life.

What has helped me most?

Peer support has been the most valuable thing for me. It’s helped me to accept my condition more, and through it, I’ve made some good friendships. 

I go to a lot of events that are diabetes related, it’s always nice now to go along and have a group of friends, rather than going and not knowing anyone. 

Through the Young Adults Panel, I’ve met some really great people who are all just as motivated to make changes. It’s quite therapeutic all of us being in a room together at the same time sometimes! And, a lot of talk outside of meetings; there’ve definitely been good friendships made through that.

Useful resources

Talking to other people – both online and in person – is my resource. You can either use it to have a bit of a rant or ask questions about something you’re not sure of or just to share things. It makes you feel less isolated and that there are a lot of people out there with type 1.

In 2017, I was on the Diabetes UK website when I saw an opportunity to join its Young Adults Panel (YAP) – a group of young adults living with Type 1 to help shape the charity’s work. 

I thought getting involved in something else would be the best way to keep myself in a positive place. And if it meant I could be with other people my age and potentially help Diabetes UK to make changes to what it offers young people then I’d really enjoy it.

Through being on the panel, I’ve also had the chance to get involved in other opportunities. In July 2018, I went to the Czech Republic on the Youth Leadership Camp for the International Diabetes Federation, which involved learning a bit more about how to campaign effectively. And I’m also on the steering group for a research project into group clinics for young people in London.